Living with the Depressing Symptoms of Myasthenia Gravis
Learning to live with myasthenia gravis after my diagnosis was depressing. No one bothered to tell me, but I knew I couldn’t drive safely, so I didn’t.
My vision was blurred, I had ptosis in my right eye, all lights caused eye pain and watery eyes. Sometimes, I felt I couldn't concentrate properly, therefore, my reflexes were trashed.
So, my husband had to be my chauffeur and take me to doctor appointments and anywhere else I needed to go. It was about 2 years before I’d drive again.
Work made my eyes feel worse
Working was horrible. I worked from home and would be in front of a computer screen for 8-12 hours or more a day. The light from the computer screen made my eyes hurt so bad - I had to take frequent breaks, just to be able to open my eyes again for a while.
It took months, but I was eventually able to work and watch TV with little difficulty and go outside without dark sunglasses on.
Missing time with my grandchildren
Our grandchildren were very young at the time and I couldn’t watch them for a while. This was one of the most difficult activities I had to give up. The thing is, at the time, I didn’t know if it would be short-term or forever.
I adore my grandchildren and that was so very depressing. We enjoyed each other and would do arts and crafts, go shopping, go to the park, cook, and do many other activities. I felt I had missed out on so much during that time.
I couldn't do anything
I also needed help with the housework because I didn’t have the stamina. For a while, I couldn’t cook, because of the weakness and pain in my back. I couldn’t even stand for a few minutes, which put such a burden on my husband and youngest son, who lived with us at the time.
I was diagnosed during the first part of December that year. I tried to decorate for Christmas but I couldn’t do it, so our son helped me. I tried to do Christmas shopping and I was in the store for maybe 5 minutes and had to return to our vehicle.
I was in such pain, felt weak, and was in tears. I could no longer walk around the store. I thought I was doomed and would never be able to do anything I enjoyed again.
Though I didn’t know at the time, this wasn’t myasthenia pain. It was from severe lumbar stenosis (I found out a couple of years later). Still, between the myasthenia and the stenosis, there was little left I could do.
Ordering a powerchair
I talked to my neurologist about what was going on. It was then, he decided maybe a powerchair would help during those times when I couldn’t walk. So, he ordered me one.
That helped so much! I was finally able to get around and feel productive again. I cooked and cleaned from that chair and was able to do things with our grandchildren and family again.
The symptoms lead to depression
Well, a year passed and I had gained at least 150 pounds of fat and fluid (edema) from Prednisone and inactivity. Not only did myasthenia gravis and all the symptoms cause my depression, but I was also repulsed and disgusted at my appearance.
It took several months for me to go out in public voluntarily again. Adjusting to those early days was one of the most difficult things I’ve had to do.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?